Monday, March 25, 2013

It has been a roller coaster of highs and lows over the past two weeks. A few weeks ago, a member of the CF community whose father I work with at Cincinnati Children's received a life-saving double lung transplant after 2 years on the transplant list. She was in respiratory failure and her lungs came just in time. I cried happy tears for her and her family. We receive weekly email updates from her father sharing her progress, and sadly just three weeks after receiving her transplant and just one week shy of her 21st birthday, Alicia Lang passed away. Her body was simply to sick to handle her new lungs. I have heard of many lives lost way to early to CF, but this was the first person that I actually knew. And I didn't really know Alicia. I'd seen her a few times and heard her speak at a CF Education Day and once when she received a Making a Difference Award. But I knew her father and I saw his fight. And at her funeral services he said that this is every CF parent's nightmare, that you never want to think about losing the fight, but you always have that fear in the back of your head. But luckily we were still high on the Volunteer Leadership Conference, and made the decision after we left Alicia's viewing that we were going to do more. And I am on it!Later that week, I was invited to a kind of cool event. Cincinnati Children's is opening a new outpatient facility and Urgent Care in Green Township, and they found local bloggers who have some sort of connection to Children's and invited them for dinner and drinks and a tour of the new facility. That CCHMC, they're one clever organization. Their clever ways are only one of the reasons that I just love this place. First of all, they saw a need on the west side of Cincinnati and they took their time figuring out the best way to fill it. They worked with their advisory board on details like child-height sinks and amazing artwork and decor to make their patients feel comfortable in what is almost never a comfortable situation. They have some amazing facilities at every location that they have, but at the new Green Township location we are talking state-of-the-art sports therapy facilities and sound proof, gorgeously decorated audiology booths, natural light EVERYWHERE. Heck, they even gave the lab a beautiful view instead of sticking them in a basement. The way that these amazing people work together, with one another, with their patients, with their community, blows my mind. I don't know what its like to be "on the inside", but from the outside, Cincinnati Children's Hospital and all of its facilities are amazing. If the rest of the world ran as seamlessly as Children's does, at least from my perspective, it would be a much better place. The new Green Township location opens at the end of April and they have quite the grand opening scheduled. On April 20 from 11-2, you can (and should) check out this amazing new facility. And no one paid me one penny to say any of this. I do truly love this place.Speaking of loving this place, I wanted to share this short video about CCHMC and you can see for yourself why they're so amazing.

Healthwise, we're dealing with our first since birth bowel issue. I won't go into the gross specifics, but we're on a Miralax clean out right now after a belly x-ray showed that Drew was backed up. Not nearly anything as serious as his meconium ileus, but just some stuff that needed some help working its way through. A Miralax clean out is gross. We're talking 6+ cups of juice with a capful of Miralax in each. I can't imagine he feels good doing this, but if it will solve our problem then we will deal with it. And frankly, he seems to just be taking it all in stride. I know this will come back to bite me in the ass, but at least he's still in diapers.I've got another big fundraising post coming up either later this week or early next. Roll your eyes if you will, we need it and I'm gonna raise it. I also have more news about the C3N for CF that I need to write about. We're looking forward to Easter and a few days without an agenda so hopefully I can find a little time to sit down and write. Happy Spring!

Thursday, March 14, 2013

The twins turn 3 today! That means 3 years ago today, we joined the CF community, though we didn't know it for another two days. It's not one that you'd ever ask to be a part of, but once you're in it you realize that it's one you couldn't live without. The way that this disease has changed our lives - the good, the bad and the ugly - has been so incredible. This year, we made it to CHOP, we made it to Disney World, and we're down a tooth, but all things told it was a pretty great year. Through Drew, and all of my kids really, but especially through Drew and this journey with Cystic Fibrosis, our lives have been truly enriched in ways that most people could never understand. A few quick picks of my boy Drew and his best bud, Lily Grace :)

I mentioned above that the life that we live with Cystic Fibrosis is one that not many could understand. I have a wonderful family, immediate and extended, and a truly terrific network of friends all across the country and beyond, but few of them know what we do day in and day out to keep Drew healthy. And I don't just mean the 2+ hours of treatments every day or the half-day long appointments we go to 4 times a year. I mean everything from the fights with insurance and the fears of catching a new bug to the psychological struggle of "Oh God I hope I'm not totally screwing this kid up" while you try to make decisions that will both keep him healthiest while allowing him to be a kid. We struggle with friendships, knowing that the ones that we have are great and that our friends understand that they can't come over if they've got a runny nose and that for good parts of the winter we don't do the playland at Chik-fil-a, but there are new friendships to be had and the teaching that needs to go on to help them understand is a lot of work. There's a stigma that a coughing kid is a sick kid. I am guilty of judging the kid at storytime who sits there hacking away, wiping their nose on their sleeve, trying to decide if we should move to the other side of the store or just leave altogether. I know that we are judged as well. There's that struggle that a parent has to go through where you have to suffer the loss of what you had hoped for, that being a healthy kid. And you get angry from time to time, but it happens year after year, when all that you want is to not be in this anymore. But you are, and you realize how much work you've already put in and how you're never going to stop fighting for your kid. So just keep on going. I'm so ready and so energized to keep on going, harder and faster than ever before.

I met so many parents like me this weekend. I met so many admirable people, fellow parents, grandparents, friends, folks who had absolutely no connection to CF who were there to learn more about how they can help. It all started when we checked in and the "theme" of the conference was Mission: Possible. We started with Bob Beall and Preston Campbell talking about what's currently happening with the foundation. And folks, let me tell you, we are in a good place. Right now 4% of the CF population is being treated with Kalydeco. I had the opportunity to talk with several people whose children were on Kalydeco and it was amazing, but more on that later. We talked about the changing mission of the Foundation and their developing strategic plans, which I must add, seem to line up pretty much directly with what we're talking about with the C3N. They are focused on collaboration. They recognize the changing nature of healthcare and want to stay ahead of that curve. To quote either Bob or Rich, sorry I can't remember who said it, "You can either manage change or let change manage you". What an awesome perspective they have! We talked a little bit about the drug pipeline and all of the wonderful drugs that are in it right now, and all the are still coming. With so much focus on the "corrector" drugs, it's important to know that they haven't lost sight of the treatments as well.

After the first general session, we broke out to talk about individual or corporate giving campaigns. We chose individual and I'm glad that we did. We talked about strategies for growing our network and raising awareness. I've often been intimidated and perhaps even annoyed when pressed to give more or to ask for more, but I get it now. The most remarkable part of this session was that the chair of our Annual Giving Campaign and a member of the Board, Rich Gray, lost his daughter to Cystic Fibrosis. He doesn't have to be there doing any of this. He's doing this for us and it was inspiring.

We talked next about the strategic plan of the Foundation with their COO, Rich Mattingly. One of the most powerful things that he said, and he said a lot of powerful things, was this: "In order to succeed, we're prepared to fail and learn from that failure." They will continue to take chances for us because the learning that they obtain from those failures drives innovation. They have also recognized the need to incorporate everyone's ideas in order to succeed. I was so, so very impressed with everything that Rich and Bob and Preston shared with us about this incredible foundation.

That evening, there was an awards ceremony that was humbling. The lengths that folks are going to and the amounts of money that they are raising to help us fund the cure is astounding. It made me want to do more.

The next morning, we heard from about the Patient Assistance Programs that the foundation has, as well as from the Government Affairs team, talking about the work that we do as advocates. Many roll their eyes or just simply pass by, but every little thing does matter. Every email that our elected officials receive does add up to a big message. You might not see it, but I do. I'm always looking for people to help with my advocacy efforts so if you're reading this and interested in any capacity, no matter who you are or where in the world you live, click that word "advocates" and you'll be helping.

Not to diminish the last few parts of the event, because all things told it completely blew my expectations out of the water, but I'm really anxious to talk about my favorite part of the event. It started with a couple from Colorado, the Elders, introducing themselves to us right before the March on the Hill started on Thursday morning. They had heard that we were from Ohio and they came to tell us about their son who now goes to school in Ohio. Their son has Cystic Fibrosis. Their son also has the G551D mutation. You know, the one Kalydeco works on. Anyway, their son had always been in pretty good health and after graduating college wanted to go on to medical school, but was being turned away because of the risks that being in a hospital setting posed to someone with CF. Enter Kalydeco. Last February, their son got a prescription for Kalydeco. He took his first pill at 8:30pm. At 3am he came banging on their bedroom door and they expected that something terrible had happened. He burst into their room and said, "I can breathe! I can breathe and I can smell and I've never in my whole life felt anything like this before!". I cried. His PFTs (lung function) went up something like 19% and he was living a life free from Cystic Fibrosis. Incredible. But even more incredible was the fact that since his health had improved so dramatically, he was accepted into Wright State in Dayton, OH and is hoping to become a doctor. That's when I just sat there and thought to myself, "Holy crap, this is really going to happen for us. Our cure is really coming."

There were several opportunities to just talk with the other conference attendees throughout the weekend and it was during those times that I learned the most valuable things. I met an amazing man, Peter Hodge, whose daughter Olivia also is taking Kalydeco. Peter doesn't need to fight anymore, he has his "cure". But Peter works harder than any other fundraiser out there, raising the much need money and awareness for this disease. At the end of the conference, with tears in his eyes, Peter said, "I will work harder than ever this year so that all your loved ones can enjoy the same success as Olivia." When our cure comes, if it helps only us, or if it helps most of the rest of the CF community, I will continue to fight for anyone that needs fighting for, and I mean it.

Another remarkable woman I met there was Angie Kinney. Angie is the mother of two girls who have Cystic Fibrosis and she is an amazing advocate. Angie worked with the CF Foundation to create this moving video - its worth 2 minutes. And if it moves you, check out my link on advocates :)

I could seriously just go on and on about all of the wonderful things that happened and all of the wonderful people that we met while we were in DC. There wasn't one single take away, but rather a whole arsenal of valuable information, great idea sharing and incredible opportunities to network with other people who "get it". I hope that we can continue to go back, year after year, and maybe one year, not to long from now, share the story of the first time our son took his first deep breath.

Sunday, March 10, 2013

Wow. I don't even know where to start. I've been excited about the Cystic Fibrosis Foundation's March on the Hill and the Volunteer Leadership Conference for some time now, but these past 4 days blew expectations out of the water. I guess I will start from the beginning.

Last weekend, we loaded up the car and drove east to my parents house near Philadelphia. We were going to spend the beginning of the week there, before leaving the kids and heading down to Washington D.C. for two Cystic Fibrosis Foundation events, March on the Hill and the Volunteer Leadership Conference. March on the Hill isn't exactly what it sounds like. It is an advocacy push on Capitol Hill, where advocates try to meet with as many members of Congress as we can to share the policy agenda of the CFF and let them know how decisions that they make can negatively or positively affect us. There is no grand "march", but there are usually 50 or so advocates who hit the hill on the same day to discuss the same issues. ANYWAY, I was supposed to leave on Wednesday morning for some training on Wednesday afternoon and then meetings with members of Congress all day Thursday. Martin was supposed to take the train down Thursday evening to meet me for the Volunteer Leadership Conference (VLC) for the following two days before we headed back to PA to get the kids and then made our return trip to Cincinnati. Well, by some point on Tuesday, the weather forecasters were predicting a few inches of snow for the entire east coast, and by Wednesday morning that prediction was up to 16 inches. I was on the phone with the CFF several times early on Wednesday morning before I was supposed to leave, as Congress had gone on recess and the event was potentially not even going to happen. Around 9am the whole March on the Hill was called off and I was seriously bummed. As the day went on, and no snow ever came, I was more and more frustrated with having not been able to participate in this advocacy event that I've been waiting about a year to attend. We were just getting ready to sit down to dinner on Wednesday night when the phone rang and it was the CFF letting me know that everything was back on! In about 30 minutes, I got my things together, decided that Martin would just be coming along with me rather than taking the train down the next day, kissed the kids goodbye and was on my way to DC.

We got to our hotel, which was 3 blocks from the Capitol, around 9pm. After getting checked in, we got our clothes all out and ironed and everything ready to go for the morning because our meetings were starting at 7am. Wednesday morning, we met with fellow advocates and the Government Affairs team from the CFF and before we knew it we were on our way to Capitol Hill. Congress was still on recess, despite the fact that there was not one snowflake to be seen and the weather was 55 degrees and sunny, but the amazing team at the CFF was able to get us meetings scheduled with their staff.

Between 10am and 4pm, Martin and I met with 7 different congressional offices, including those of our very own Congressman, Rep. Brad Wenstrup and Speaker of the House John Boehner. In past years, the CFF has had an action item, or something that we were asking them to vote for or against. This year it was a little more vague, in that there was no specific bill that we were talking about, but rather the effect that the sequestration would have on patients with Cystic Fibrosis. Believe it or not, I am not very politically savvy, but I have taken the time to learn about things that would affect us. By "us", I mean the Cystic Fibrosis Community. I should learn more about everything that affects us as a family or as a community, but like I said, i'm just not that politically savvy, and I'm out of time. I digress. Back to the sequestration. Here's what it is in a nutshell (per cnn.com):

"The sequestration is a series of automatic, across the board cuts to government agencies, totaling $1.2 trillion over 10 years. The cuts would be split 50-50 between defense and domestic discretionary spending. It's all part of attempts to get a handle on the growth of the U.S. national debt, which exploded upward when the 2007 recession hit, and now stands at more than $16 trillion."

In the beginning of March, as in 10 days ago, the cuts started to happen, and one of them is an 8% cut in funding to the National Institute of Health. The NIH is the primary agency of the US government responsible for biomedical and health-related research. The NIH provides the CFF with grant money and funding for a lot of the research that they do, in combination with the money that we raise as fundraisers, and sponsors researches, like J.P. Clancy at Cincinnati Children's, with the work that they do as they search for a cure. An 8% cut in funding means that there both won't be as many grants provided and the grants that are given out will be funded at 10-20% less than they currently are. This could mean that studies that we want to happen could be delayed or frankly not have enough money to even happen. Additionally, if they did happen and if these studies showed great value in the drug, the road to drug approval could be delayed because jobs at the Food and Drug Administration would be cut to save money, leaving less people to review drugs and pass them through to approval. Imagine that your child had the G551D mutation, the one that Kalydeco works for. And you know that Kalydeco exists and could change your life, but there's not enough money to get it passed through the FDA for approval. Simply unacceptable. And this is just one example (at a high level) of how cuts to the NIH and FDA would have a negative effect on the CF community. We specifically asked that our elected officials provide the National Institutes of Health (NIH) with the funding needed to support essential research and promote and protect programs that help researchers translate exciting scientific discoveries into potential treatments, an expensive and complex process.

Another issue we were focused on was asking these Congresspeople to enable people with cystic fibrosis to access the care and treatment they need to live longer and healthier lives. With healthcare costs ever on the rise, we are beginning to see insurance companies deem some care centers "out of network". Our trips to the CF Clinic aren't like your average doctor appointment. Our appointments include a number of specialists - a pulmonologist, a gastroenterologist, a dietitian, a respiratory therapist, an ENT, an endocrinologist, a social worker, and sometimes more. This "team approach" to care allows all of the specialists that need to see Drew to see him in the same setting at the same time and coordinate and collaborate on his care. This is not cheap, and insurance companies recognize it and are deeming it unnecessary. But in reality, if he gets denied coverage by insurance at an accredited care center and has to see all of these doctors elsewhere from specialists who aren't familiar with Cystic Fibrosis care, his health will suffer and he will end up needing more frequent and repetitive testing as well as many times unnecessary, and he will likely end up spending more time in the hospital, ultimately costing his insurance company a lot more in the long run. We are asking Congress to support access to quality health care that adheres to the current standards recommended by CF treatment and research experts and to help cystic fibrosis patients get the medical care they need by reducing the unmanageable cost-share burden of this disease.

Most of the offices that we met with seemed to agree with us on the importance of the NIH and told us that they are looking for solutions. I will definitely be following up to let them know how important this is to all of us in the CF community, and I ask that if you have a moment that you join us by doing the same. By clicking on this link, TELL CONGRESS: PROTECT OUR PROGRESS TOWARD A CURE FOR CF, your voice can be heard too, and the more they hear from people supporting the same cause and sharing the same message, the more likely they are to listen.

There ended up being only 15 of us "Marching on the Hill", but the excitement and power of this amazing group of people was energizing. I know I will be doing more, and I hope you will too!

This post is getting WAY longer than I had intended it, but hopefully it's because my passion is shining through. It is late and I am exhausted. I apologize for typos. I will try to continue with the second part of our trip, the Volunteer Leadership Conference, later this week, but as with the March on the Hill it totally exceeded expectations which started out high, and I want to share every little detail. This may end up being a 3 part post! Stay tuned!!

Friday, March 1, 2013

Right now many large health organizations have a Facebook page, as do countless foundations and many physicians. Additionally, patients have formed online support communities within Facebook and elsewhere. The problem with some of these "patient only" communities is that there is a whole lot of drama and negativity. The biggest problem though, in my opinion, is that information takes on a life of its own and inaccuracies become "fact", creating confusion and misunderstanding. There is plenty of communication by patients and physicians, but there is a lack of communication between patients and physicians. Physicians are often viewed at the bad guy by patients, and patients as non-compliant and non-adherent by physicians. When the lines of communication are simplified and made more clear, everyone begins to view the patient-physician relationship as a partnership.

Facebook is a place where we can share honest information with a large community of people and conversations can take place benefiting everyone. Patients who may not be forward or comfortable enough to ask questions to their doctors could find answers to things they want to know in discussions they could see between other patients and physicians from our clinic. And more verbal patients (like myself) can ask questions or prompt conversations on topics that they have questions about and the whole community gets to see that feedback. Additionally, tips and tricks that are safe and approved by our clinic could be shared, providing value to patients. We can announce clinical trials, education days, fundraising events the CF Foundation or hospital might be having. People who follow our Facebook feed could see what the PIQI group is working on and it could spark more interest in participation. I think Facebook is a good way to show patients that we are team. We truly want to help and are trying to facilitate that in any way we can. Having our own page allows us to create our social media presence and set the tone for how we want people to perceive us. Right now, the other CF pages are setting that tone for us, down talking specific hospitals or physicians for what they do or don't do based on a single experience that once person might have had. We should be be able to tell people from the horses mouth what we do and what we recommend and support and what we do not.

"65 Roses"is what some children with cystic fibrosis call their disease because the words are much easier for them to pronounce.

This blog, 66 Roses, is dedicated to finding the cure.

Cystic fibrosis is a life shortening genetic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Thick mucus clogs the lungs and leads to life threatening infection. The pancreas is also obstructed by this thick mucus production, imparing digestion and leading to malnutrition. - www.cff.org